I think the idea is that I should be reading manga and resting. But there is too much to DO!I mean, while yes, I do have to go to Booth Gardner, I got my new corset by post today and it is medium junior and a little bit MORE medium (aka, smaller) than the last one I got. So did it fit? Well, the joys of the corset and the female form is that with enough will power it always fits (Cheryl said, ‘well, there are just ribs, I guess it isn’t going to fit’ – I thought, “That’s what you think” – two minutes later it was on). It looks very shapely if I may say so myself,
although having a necklace of smelling salts might be prudent. Haha – I brought extra corsets in case I need to change!Oh, sorry the big news is that I, Dr. Elizabeth McClung was TOTALLY WRONG. Yes, and it has give me a four letter response. After I talked to the guy (Dr. I.) who thought that female doctors’ were the reason (besides Jubilee being the worse hospital in Canada – his statement not mine!) health care here is crap for the chronic and terminal. Dr. I, said OF COURSE I had Lichen Sclerosis. However he was too busy to look. So I had to come back the next morning to the new walk in clinic in the village to see Dr. J. I told her I had Lichen Sclerosis and she said, “No you don’t.” I said, “Well, it might be Lichen Planus.” And she she, no, that is actually more common here, and she indicated the front of the shin. Of course, I am having this conversation sitting up facing her, with my Victoria Secret RED panties (go out in style!) at my ankles. She said, there is a very distinct discharge with Lichen Sclerosis.
I told her I HAVE a discharge, I have anemia, I have Progressive Anemia, I have a thyroid problem, I have an auto-immune disease ergo, Lichen S.
She said, “No, what you have is a severe hormone imbalance, and the discharge you are talking about, that brown on, it is dried blood because your skin is membrane here and bleeding out and your labia are fused and anytime you stress it (like say, taking a dump) you bleed (combined with pus and other fun stuff maybe dead white blood cells).
I said, “Oh.”
She said, “You have a severe deficiency in estrogen.” I explained I was already dealing with imbalance with pills.
She prescribed a cream. And I went, “OHHHHH!” and sank my head in my hands. She took this as a form of humility I think. And started explaining something. Actually, I was going, “Why have I been so STUPID!” (yes, it is possible to be a genius, catgirl or BOTH and still blow it!)
I have been asking myself how I could be losing 1/3rd my weight while eating while Linda does and just sitting there, no exercise. And when you add in the hypothryrodism…..? Except I need many probiotics to try and absorb nutrients and I have been wondering if things are being broken down in the stomach at all. Wondering what if all is being absorbed. And I have been taking my estrogen supplements…orally! And due to Dr. Jimmy, no checking of hormone levels in like a year or more. Get the “OH!!!” Yes, I have a deficency and the hormones can’t get there. A cream is better, a cream solves the problem!I asked her if the skin would thicken up. She said she believed so. I asked what about my hair, it was so thin and falling out in clumps. She said to wait and see. Here I had been complaining to Linda that with my breasts reduced in size I was feeling…..well sexless. I had been having dreams like that. With last recording of Androgen at 0.0 and two doctors looking at me going, “You have a severe hormone imbalance, and a estrogen deficiency.” It makes sense. I will put on the cream. I will see what happens. I have hope.
Of course, there is a problem that with adding all sorts of hormones to me, there could be a slight period of adjustment, where I have imbalance the other way. We have to hope for the local population that this does NOT happen.
They need to get the correct level quickly for everyone’s safety!For me Booth Gardner had three options, a) they tell me that it is all in my head (hey, I’m female: we must have tremendous brains for all the things we can have in our head from M.S. to CFS/M.E. and Fibro!), b) They tell me I am going to die or c) they tell me they don’t know. What this has made me realize is that I do NOT know ALL of the options. That as much as I like to think I have worked out all the options and that I am stuck here in a medical tower, far from help.
So maybe that isn’t true (the trained crows who do my bidding are true however!).I realized that like this woman who I asked, “Why do you KNOW this.” She said quite reasonably, “Well, I have seen Lichen S. and Lichen P and this estrogen deficiency (usually in the very young, the adolescent and the older but still, very distinctive). I told her that was the same grouping for Lichen S. She outlined the difference she had seen in her 30 years of practice in Portland, OR. Oh. Okay. Wait, Portland, like the USA? I asked her if she believe in treatment based medicine? She didn’t know what I was talking about.
I told her I had hypothyroidism but I couldn’t get a referral in order to…she interrupted, “Oh, I can give you syn-thyoid.”
“You don’t need to refer me?”
“No, why would I, vagina’s and thyroids I am very good at!” She wasn’t so great on complex autoimmune diseases, however the owner, Mark, who works in Vancouver and is over once a week is VERY interested as is an older woman doctor who seems to have a fine point focus and we spent 20 minutes talking details and she left saying, “I could talk about this forever, but I have patients.” They renew prescriptions. The Admin person help Linda get the MRI recording of my brain for Booth Gardner. They invited me to be a patient of theirs. I signed up. I now have team of 4 GP’s to return to.
But more important, I realized, as I talked to this very competent woman who worked in Portland that the doctors at Booth Gardner could come up with an EQUALLY logical and reasonable explanation that I have simply NOT THOUGHT OF.
Of course, I am on a rebreather mask, and have 70% heart erratics now both showing central autonomic function, I also can’t feel my feet and have loss of nerves in my hands and have overheated 5 times today showing peripheral nerve damage. Even MSA people go, “How is that possible?” I don’t know!! I just live the life. They say autonomic failure and you have either cancer or the PAF/MSA group. But see, I could go in there and they could tell me something logical I never thought, like for example that I am B-12 sensitive, and my initial B-12 deficiency created pernicious anemia which destroyed peripheral nervous systems. And now, anything like my current anemia triggers it to restart, which is why I am losing more now. That is logical and something I never thought of; and they could say they have seen it X number of times. And maybe they have an explanation for the central autonomic failure. I don’t know. But maybe a treatment and maybe I will come home and not feel like a little pawn on someone’s large chessboard
where I was the medical pawn everyone was desperately trying to forfeit.Maybe having that four letter word: hope. Maybe it will make it all the harder if they say what I pretty sure what they will say. But I am not just going now for pain control (my Portland GP can do that), or other things that a GP SHOULD be able to do. Either way, I will leave there knowing my future. And I DO have a future; 8 I am going to Sakura-con, I am going to do the Times Colonist 10K, even if it takes me 2 hours, I WILL do it. Because I have a future; even if it is counted in weeks or days; months maybe, it is STILL a future. But now I have hope: hope that I will for once be ORDINARY, that I will be the ‘easy case’ because they know what to do. And I will have an anniversary of this day; the day my future grew, like a sunflower, high to the sun.



25 comments:
Do get some rest before the trip, please--that's not likely to be easy on your body. And you want lots of energy for Sakura-con!
I was thinking how nice this new doctor seems and capable and then realized, oh...an American doctor. I guess I'm developing prejudices against the Canadian system and its bureaucracies. I love it when a GP or a specialist I see more regularly than the GP (the gyn or rheumatologist) can handle something without referring out. *Finally* with the synthroid! I have antithyroid antibodies and show a lot of symptoms but my blood levels of whatever it is show as okay. Some people say that's an indication for synthroid. Thyroid might be causing your hair loss too, and some people actually lose weight with hypo or gain weight with hyper (opposite of what's expected but people eat a lot sometimes from the excess energy). Also, your body uses a lot of energy in seizures, probably more than with exercising and with heart issues and trying to deal with autonomic issues so you may need more caloric intake because of that, or it may be that you're not absorbing a lot, as you suggest--that reminds me of celiac.
Rebalancing your hormones will also reduce the stresses to your system and may make you less fatigued. I took bioidentical progesterone for a while and felt much sharper on it; I also had the estrogen shortage for a while and my boobs all but disappeared, my gyn noticed the difference too.
I have some hope for some answers with Booth Gardner too. Regardless of what they find, my guess is that it will be the most appallingly undertreated version that they've ever seen.
Oh, Beth. You have a GP! No, FOUR! Who listen to you, who know what they're doing and who're TREATING YOU??? Congratulations!
And congrats on the hope. Hope is everything. Big hugs.
Beautiful post; I too hope they have a new answer. What is the saying? Hope for the best, prepare for the worst.
I am glad you have hope, and at least one doctor who knows what she is doing and is willing to do it.
This is joyous news, indeed, that you have found doctors who actually care about your case, who don't leave the investigative work to you, and who explain their diagnosis so that you know what has been taken into account. May this be your experience at BG, also. It's great to dare to hope.
Yay! I'm so pleased that you found a doctor who treated you well, both as a patient and as a human being. :) Hopefully this will be the start of excellent, quality medical care!
Sounds great. A doctor who did a creative thing. Good luck:)
Oooh! 'I do spy a kind of hope...'
That sounds like an intelligent doctor. Long may she live and practice. Hope the cream does have the desired effect and this is a start of some good and helpful things.
Should that corset have a padlock, in case the cream works too well?
I really like the idea of reading manga and resting. I will second Linda and Cheryl on that one because I guess the travelling and so on will be stressful too.
So this new doctor, intelligent thinking doctor, is in Portland? Or is she accessible to you nearer home?
Oh Beth, I am SO glad to hear that you last found a GP team who are willing to do their job, and who are happy to take on a self-educating patient! (plus that you have realised that although you are an expert on Beth-disease, there MAY be people who know something unexpected or different about what's going on, that just because your reading suggests limited options, doesn't mean there are totally no options). So glad for you - happy day! Sunflowers and kittens!
A good doctor? I'm not sure I can handle the shock! :P
Seriously, though, I'm really glad someone is finally listening to you and doing something useful.
We will keep hope, too, that something good will come of this. Do try to get some rest!
It is so great to hear the hope in your voice in this post. And to have a new doctor who revealed something you hadn't thought of, that is helpful (isn't that what they're supposed to do???) - fantastic.
Wait, where is this doctor? In Canada? Should this give me hope for universal health care, or is she just visiting for a couple of months?
Yay for doctors who know what they're doing!
OMG. Am I to understand that (sorry that I've apparently missed this before) you've been diagnosed as hypothyroid... but they've NEVER GIVEN YOU SYNTHROID for it?!
WHAT?
I've had hypothyroidism for around 12-13 years now. My regular (then)GP diagnosed it after the simple bloodtest proved it (and it was pretty low, too!) - and wrote me the Rx right there.
Sure it took months to titrate (adjust) the dosage just right; you must start at a low dose and take it for 4-6 weeks for it to get into your system well enough, then take another TSH test to measure. This continues until you're into the 'zone' - which the local labs are still so outdated to tell you 'normal' is 0.5-5.5 when the American Endocrinology Assn. (pretty conseravative ppl) realised that was too broad and reset 'normal' range to 0.3-3.5 (I believe, but you can easily double check).
The reason I mention this is that often docs will leave you with a TSH of, say 5.1, supposedly 'normal' but for many women, their normal was around 1.0-2.0 - usually closer to 1.0 - but most people aren't tested UNTIL THERE IS A PROBLEM!
Yeah, my clues were gaining 40lbs in a few months, my hair fell out in an scary baldish patch near my forehead (hard to miss) my skin was dry and flaky (ew) and I became depressed, like clinically depressed.
But with time, the Synthroid DID help. It's cheap (bonus) and there are a few other drugs which can help tweak things if it's not ideal... but that's getting even fussier.
The point was, ANY GP should be able to write an Rx and titrate Synthroid. You could go to an endocrinologist, but it's NOT AT ALL necessary!
In fact, I once didn't realise I was out of refills on my Synthroid and it was a holiday long weekend, so I went to a local walk-in clinic and explained what had happened. The doc there (who'd never seen me before, though I'd been to the clinic, just not for that) was happy to write me an Rx for it, agreeing that I wouldn't want to be without that!
SORRY! Ranting there. What kind of completely incompetent MORONS have you been dealing with? Oh, RIGHT, those ones {if looks could kill, those docs would be dead, each of them}.
YAY, I'm SO freakin' glad that there was not one but SEVERAL docs there who can help you. JEEEZ, and this clinic is close to boot?! Yippee!!!
I am so praying that this is the sign of a HUGE turn of tide for you... Booth Garnder - great, but how about some help for Beth in her own town, for @*$)'s sake? YEAH!
"hope is the thing with wings..."
This made me feel happy for you! You must be relieved to have someone listen to YOU who are, after all, the person who is the expert in your own body.
Wait! You have a doc who doesn't have their head up their ass & actually looks at you for exams & is willing to do tests & rx meds? Holy shit! I am over the moon happy for you!
You know now that you've told us all of a new corset we'll expect a photo shoot.
It never fails to amaze me the effect one person, a single individual person, can have. One doctor looks, listens, uses their expertise and treats. Even maybe given a greater gift of hope.
It's worth remembering the gift a person can give to another without even realising it. And to understand that you. me, each of us may be giving gifts to others by using our own humanity.
I'm relieved you have a simple treatment for this most troublesome of symptoms and GP's (plural!) who want to work WITH you. And a little entertained that you had to admit you were wrong ;o)
Um, I also question whether this miraculous-sounding doctor is in Canada or USA?
Sorry I haven't been around for a few days; I read about Sara's death, and just couldn't say anything. My grief for her rather surprised me, considering little I knew her. Her new leg was very cool, and the I applaud the maker who allowed the art project that she created with it. I hope her family's okay, and I'm sorry to see her go.
I hope you do well with the new quartet of doctors; now REST in preparation for Booth Gardner! Rest, or take photos of the new corset: what a choice!
I hope you're BOTH doing well. Linda's health is as important as yours, after all.
Ah, reading your comments from Thursday's post, I thought maybe the new doctor is in Port Angeles, but you appear to have seen her before you left for P.A.
Okay, I'm heading to the couch of confusion now. Or maybe not, since I should really be getting ready to head off to work.
Best wishes to both of you, and Cheryl too! I hope the travelling's going well.
Love and hugs,
Neil
I'm hoping too.
Can't do any more, from here, but I am hoping!
Love, peace & sisterhood
I've been out of the loop for a bit, so it's really fab to drop by and find that you've found a place with intelligent docs who also seem to *gasp* treat you like a human being. Such very good news.
Things are blooming with gusto now, and your hope is a beautiful addition to Spring. I have hopes for Booth Gardner as well; and, though I know you're a smarty-pants, I do believe they have a lot of training and experience on their side and could indeed come up with something new and some options.
I'm really happy to hear that you've finally found a Dr. that will actually listen/help you :)
I can't think of much to say that I didn't already say in an email, so I'll say this: You're in my thoughts today as always, and I have Hope too, Hope for you, for a better explanation, a new quality of life, another year, another Sakura con, a trip to Hawaii...
Non-disabled people are frightened of us for one main reason:
We force them to realize that not all life is perfect and unchangable. People like you who were "perfectly healthy" but became disabled as an adult scare them more because you show them that ANYTHING can happen to THEM no matter how much they workout or eat a healthy diet.
Sock it to 'em, babe!
Wishing you the best with the new docs. I hope you got my e-mail and stamps and I hope you'll get rest before the trip. Take care.
Yay! Hope is good - very, very good. I can't believe it! A doctor who dxs & treats! And talks to you too! Now I can hope out loud for you! Please rest up for the trip & appointments at BG.
Sharon
PS I have my 2nd appointment with the endocrinologist tomorrow.
heh. finally, someone who's willing to treat you for something. !
Hope the travel and staying away is going as smoothly as possible. Take care of yourselves, all of you.
I'm still feeling so pleased about the doctor you wrote about here, I'm practically glowing :)
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